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This retrospective, secondary qualitative analysis investigates whether health system factors influence social support among Black and white breast and lung cancer survivors and racial differences in support. These data come from race- and cancer-stratified focus groups (n = 6) and interviews (n = 2) to inform a randomized controlled trial utilizing antiracism and community-based participatory research approaches. Findings indicate social support was helpful for overcoming treatment-related challenges, including symptom management and patient-provider communication; racial differences in support needs and provision were noted. Resources within individual support networks reflect broader sociostructural factors. Reliance on family/friends to fill gaps in cancer care may exacerbate racial disparities.

PURPOSE: Annually, >45,000 U.S. women are diagnosed with cancer during adolescence and young adulthood (AYA). Since 2006, national guidelines have recommended fertility counseling for cancer patients. We examined childbirth after AYA cancer by calendar period, cancer diagnosis, and maternal characteristics. METHODS: We identified a cohort of women with an incident invasive AYA cancer diagnosis at ages 15–39 during 2000–2013 in North Carolina. Cancer records were linked with statewide birth certificates through 2014. Hazard ratios (HR) and 95% confidence intervals (CI) for first post-diagnosis live birth were calculated using Cox proportional hazards regression. RESULTS: Among 17,564 AYA cancer survivors, 1,989 had ≥ 1 birth after diagnosis during 98,397 person-years. The 5- and 10-year cumulative incidence of live birth after cancer was 10% and 15%, respectively. AYA survivors with a post-diagnosis birth were younger at diagnosis, had lower stage disease, and had less often received chemotherapy than those without a birth. The 5-year cumulative incidence of post-diagnosis birth was 10.0% for women diagnosed during 2007–2012, compared to 9.4% during 2000–2005 (HR=1.01; 0.91, 1.12), corresponding to periods before and after publication of American Society of Clinical Oncology fertility counseling guidelines in 2006. CONCLUSIONS: Despite advances in fertility preservation options and recognition of fertility counseling as a part of high quality cancer care, the incidence of post-diagnosis childbirth has remained stable over the last 15 years. IMPLICATIONS FOR CANCER SURVIVORS: Our study uses statewide data to provide recent, population-based estimates of how often AYA women have biological children after a cancer diagnosis.

The concept of intersectionality has been used to analyze and understand how multiple forms of identity and oppression interact to shape life experiences of marginalized groups. We conducted a qualitative study to explore how Black Brazilian women experience the intersections of race, class, and gender and the ways in which these intersecting experiences act as social determinants of health. Nine focus groups were conducted with Black, White, and mixed-race women of childbearing age (n = 37), social and health activists (n = 11), and health professionals (n = 20). The focus groups took place in two cities in the Brazilian state of Bahia during October and November 2012. Using a comparative approach, we describe participants' responses regarding the life experiences of women of differing racial and class backgrounds. Our findings highlight how the intersectional relationship between race, class, and gender alters women's social context and life course opportunities, as well as their stressors and protective buffers. We argue that the differing intersectional experiences of women due to race and class create unique social contexts that define the parameters of health and wellness. In addition, we argue that the experiences at each intersection (i.e., raceXclass, raceXgender, classXgender, raceXclassXgender) have a unique character that can be qualitatively described. Improved specification of exposures experienced by marginalized populations who experience intersecting forms of oppression can help explain intra- and inter-group differences in health outcomes, and may also lead to improved intervention models.

PURPOSE: Racial disparities in cancer treatment-related symptom burden are well-documented and linked to worse treatment outcomes. Yet, little is known about racial differences in patients’ treatment-related symptom management experiences. Such understanding can help identify modifiable drivers of symptom burden inequities. As part of the Cancer Health Accountability for Managing Pain and Symptoms (CHAMPS) study, we examined racial differences in symptom management experiences among Black and White breast cancer survivors (BCS). METHODS: We conducted six focus groups (n=3 Black BCS groups; n=3 White BCS groups) with 22 stage I-IV BCS at two cancer centers. Focus groups were audio-recorded and transcribed verbatim. Based on key community-based participatory research principles, our community/academic/medical partner team facilitated focus groups and conducted qualitative analyses. RESULTS: All BCS described positive symptom management experiences, including clinician attentiveness to symptom concerns and clinician recommendations for pre-emptively managing symptoms. Black BCS commonly reported having to advocate for themselves to get information about treatment-related symptoms, and indicated dissatisfaction regarding clinicians’ failure to disclose potential treatment-related symptoms or provide medications to address symptoms. White BCS often described dissatisfaction regarding inadequate information on symptom origins and clinicians' failure to offer reassurance. CONCLUSIONS: This study elucidates opportunities for future research aimed at improving equity for cancer treatment-related symptom management. For Black women, warnings about anticipated symptoms and treatment for ongoing symptoms were particular areas of concern. Routine symptom assessment for all women, as well as clinicians’ management of symptoms for racially-diverse cancer patients, need to be more thoroughly studied and addressed.

African-American (AA) female cancer survivors share a disproportionate burden of diabetes compared to their white counterparts. Our objectives were to explore the perspectives of AA survivors with type 2 diabetes on perceived barriers to physical activity (PA) and preferences for a PA intervention and develop a framework for a PA program after cancer treatment. Trained interviewers conducted semi-structured interviews with AA survivors of breast or endometrial cancer with diabetes (total n = 20; 16 breast, 4 endometrial). Thirteen open-ended questions were posed to stimulate discussions, which were audio recorded and transcribed verbatim. Two investigators independently reviewed transcriptions and extracted coded quotations to identify major themes. Median age of participants was 63 years. Nine themes were identified that focused on post-treatment physical symptoms (e.g., lymphedema, bone/joint pain, depression symptoms and self-motivation as barriers to PA, exercise routines tailored to physical limitations and peer partners and program leaders who understand their emotional health needs). The S.U.C.C.E.S.S. framework summarizes the survivors’ preferences for an effective lifestyle intervention: Support efforts to maintain PA, Understand physical and depression symptoms, Collaborate with multi-disciplinary provider, Coordinate in-person intervention activities, Encourage partnerships among survivors for comorbidity risk reduction, develop Sustainable coping strategies for side effects of treatment, and Share local community resources. Survivors verbalized the need for a multi-disciplinary team to assist with their psychosocial needs and physical limitations to achieve their PA goals, as integrated into the S.U.C.C.E.S.S. framework. The S.U.C.C.E.S.S. framework reflects the perspectives of survivors with type 2 diabetes and may help to inform post-treatment programs.

Health-related quality of life (HRQOL) and pain are important supportive cancer care outcomes. The patient-provider relationship, a modifiable care experience, has been linked to healthcare outcomes; however, less is known about associations between patient-provider relationship and supportive care outcomes in cancer patients. We examined the role of multiple aspects of the patient-provider relationship in explaining patterns of HRQOL and pain among breast and lung cancer patients. Our analysis included 283 breast and lung cancer patients from two cancer centers. Clinical data and survey data on patient sociodemographic factors, physical and mental HRQOL, pain, and patient-physician relationship (i.e., doctor’s respectfulness, time spent with doctors, patient involvement in decision-making, satisfaction with care, and following doctor’s advice/treatment plan) were collected at baseline and during treatment. We estimated adjusted modified Poisson regression models to assess associations between patient-physician relationship factors and physical and mental HRQOL and pain. Compared with patients reporting suboptimal respect from doctors, patients reporting optimal respect were less likely to report below average physical HRQOL (adjusted risk ratio (ARR), 0.73; 95%CI, 0.62–0.86), below average mental HRQOL (ARR, 0.71; 95%CI, 0.54–0.93), and moderate-to-severe pain (ARR, 0.53; 95%CI, 0.35–0.79). Patients reporting optimal involvement in care decision-making and patients who reported following their doctor’s advice/treatment plan were less likely to report below average mental HRQOL than their respective counterparts (ARR, 0.64; 95%CI, 0.50–0.83; ARR, 0.65; 95%CI, 0.48–0.86). Multiple patient-physician relationship factors account for variations in HRQOL and pain in cancer patients. These findings provide insight into potential targets for improving the patient-provider relationship and supportive cancer care outcomes.

BACKGROUND: Cancer patients can experience healthcare system-related challenges during the course of their treatment. Yet, little is known about how these challenges might affect the quality and completion of cancer treatment for all patients, and particularly for patients of color. Accountability for Cancer Care through Undoing Racism and Equity is a multi-component, community-based participatory research intervention to reduce Black-White cancer care disparities. This formative work aimed to understand patients’ cancer center experiences, explore racial differences in experiences, and inform systems-level interventions. METHODS: Twenty-seven breast and lung cancer patients at two cancer centers participated in focus groups, grouped by race and cancer type. Participants were asked about what they found empowering and disempowering regarding their cancer care experiences. The community-guided analysis used a racial equity approach to identify racial differences in care experiences. RESULTS: For Black and White patients, fear, uncertainty, and incomplete knowledge were disempowering; trust in providers and a sense of control were empowering. Although participants denied differential treatment due to race, analysis revealed implicit Black-White differences in care. CONCLUSIONS: Most of the challenges participants faced were related to lack of transparency, such that improvements in communication, particularly two-way communication could greatly improve patients’ interaction with the system. Pathways for accountability can also be built into a system that allows patients to find solutions for their problems with the system itself. Participants’ insights suggest the need for patient-centered, systems-level interventions to improve care experiences and reduce disparities.

OBJECTIVE: Evidence suggests peer support (PS) is as an effective strategy for enhancing prevention and control of chronic and infectious diseases, including cancer. This systematic scoping review examines the range and variety of interventions on the use of PS across the cancer care continuum. METHOD: We used a broad definition of PS to capture a wide-range of interventions and characterize the current status of the field. Literature searches were conducted using PubMed, SCOPUS, and CINAHL to identify relevant articles published from January 2011 – June 2016. We screened the title and abstracts of 2087 articles, followed by full-text screening of 420 articles, resulting in a final sample of 242 articles of which the most recent 100 articles were reviewed (published June 2014 – May 2016). RESULTS: A number of the recent intervention studies focused on breast cancer (32%, breast cancer only) or multiple cancer sites (23%). Although the interventions spanned all phases of the cancer care continuum, only 2% targeted end-of-life care. Seventy-six percent focused on clinical outcomes (e.g., screening, treatment adherence) and 72% on reducing health disparities. Interventions were primarily phone-based (44%) or delivered in a clinic setting (44%). Only a few studies (22%) described the impact of providing PS on peer supporters. CONCLUSION: PS appears to be a widely used approach to address needs across the cancer care continuum, with many opportunities to expand its reach.

Background : Accountability for Cancer Care through Undoing Racism™ and Equity (ACCURE) is a systems-change intervention addressing disparities in treatment initiation and completion and outcomes for early stage Black and White breast and lung cancer patients. Using a community-based participatory research (CBPR) approach, ACCURE is guided by a diverse partnership involving academic researchers, a nonprofit community-based organization, its affiliated broader based community coalition, and providers and staff from two cancer centers. Objectives : This paper describes the collaborative process our partnership used to conduct focus groups and to code and analyze the data to inform two components of the ACCURE intervention: 1) a “power analysis” of the cancer care system and 2) the development of the intervention’s training component, Healthcare Equity Education and Training (HEET), for cancer center providers and staff. Methods : Using active involvement of community and academic partners at every stage in the process, we engaged Black and White breast and lung cancer survivors at two partner cancer centers in eight focus group discussions organized by race and cancer type. Participants were asked to describe “pressure point encounters” or critical incidents during their journey through the cancer system that facilitated or hindered their willingness to continue treatment. Community and academic members collaborated to plan and develop materials, conduct focus groups, and code and analyze data. Conclusions : A collaborative qualitative data analysis process strengthened the capacity of our community–medical–academic partnership, enriched our research moving forward, and enhanced the transparency and accountability of our research approach.

Importance Cancer diagnosis and treatment may adversely affect reproductive outcomes among female cancer survivors. Objective To compare the birth outcomes of adolescent and young adult cancer survivors (AYA [diagnosed at ages 15-39 years]) with those of women without a cancer diagnosis. Design, Setting, and Participants The North Carolina Central Cancer Registry (CCR) was used to identify female AYA cancer survivors diagnosed from January 2000 to December 2013; CCR records were linked to statewide birth certificate files from January 2000 to December 2014 to identify postdiagnosis live births to AYA survivors (n = 2598). A comparison cohort of births to women without a recorded cancer diagnosis was randomly selected from birth certificate files (n = 12 990) with frequency matching on maternal age and year of delivery. Main Outcomes and Measures Prevalence of preterm birth, low birth weight, small-for-gestational-age births, cesarean delivery, and low Apgar score. Results Overall, 2598 births to AYA cancer survivors (mean [SD] maternal age, 31 [5] years) were included. Births to AYA cancer survivors had a significantly increased prevalence of preterm birth (prevalence ratio [PR], 1.52; 95% CI, 1.34-1.71), low birth weight (PR, 1.59; 95% CI, 1.38-1.83), and cesarean delivery (PR, 1.08; 95% CI, 1.01-1.14) relative to the comparison cohort of 1299. The higher prevalence of these outcomes was most concentrated among births to women diagnosed during pregnancy. Other factors associated with preterm birth and low birth weight included treatment with chemotherapy and a diagnosis of breast cancer, non-Hodgkin lymphoma, or gynecologic cancers. The prevalence of small-for-gestational-age births and low Apgar score ( Conclusions and Relevance Live births to AYA cancer survivors may have an increased risk of preterm birth and low birth weight, suggesting that additional surveillance of pregnancies in this population is warranted. Our findings may inform the reproductive counseling of female AYA cancer survivors.

Background Black-white disparities in breast cancer incidence rates and birth outcomes raise concerns about potential disparities in the reproductive health of premenopausal breast cancer survivors. We examined the prevalence of preterm birth (PTB), low birthweight (LBW), and small for gestational age (SGA) by breast cancer history and effect modification by race. Methods We analyzed linked North Carolina birth records and Central Cancer Registry files from 1990 to 2009 (n = 2,325,229). We used multivariable negative log-binomial regression to calculate prevalence ratios (PRs) and 95% confidence intervals (CIs) for the association between breast cancer history and PTB, LBW, and SGA. Results Of 1,912,269 eligible births, 512 births were to mothers with a previous breast cancer diagnosis history. Average age at breast cancer diagnosis was 31.8 years (SD = 4.7). Mean time from diagnosis to delivery was 3.3 years (SD = 2.8). After multivariable adjustment, the PR was 1.67 (95% CI, 1.42–1.97) for PTB, 1.50 (95% CI, 1.23–1.84) for LBW, and 1.30 (95% CI, 1.05–1.61) for SGA comparing women with a breast cancer history to the general population. Among black mothers, the PRs associated with breast cancer history for PTB, LBW, and SGA were 1.31 (95% CI, 1.00–1.72), 1.49 (95% CI, 1.14–1.94), and 1.44 (95% CI, 1.11–1.87), respectively. The corresponding PRs among white mothers were 2.06 (95% CI, 1.67–2.54), 1.53 (95% CI, 1.12–2.08), and 1.10 (95% CI, 0.77–1.58), respectively. The interaction between breast cancer history and race was statistically significant for associations with PTB, but not for LBW or SGA. Conclusions In our data, women with a breast cancer history were at higher risk of delivering a PTB, LBW, or SGA infant, especially if they received chemotherapy or gave birth within 2 years of their breast cancer diagnosis date.

Background Community-based participatory research (CBPR) is a collaborative and equitable approach to research inquiry; however, the process of establishing and maintaining CBPR partnerships can be challenging. There is an ongoing need for innovative strategies that foster partnership development and long-term sustainability. In 2010, the University of North Carolina at Chapel Hill developed a CBPR charrette model to facilitate stakeholder engagement in translational research. Objective To describe how the Cancer Health Accountability for Managing Pain and Symptoms (CHAMPS) Study leveraged the CBPR charrette process to develop and strengthen its CBPR partnership and successfully implement research objectives. Methods Fourteen CHAMPS community, academic, and medical partners participated in the CBPR charrette. Two co-facilitators guided the charrette application process and in-person discussion of partnership strengths, needs, and challenges. Community experts (CEs) and academic experts (AEs) with extensive experience in CBPR and health disparities provided technical assistance and recommendations during the in-person charrette. Conclusions Overall, the CHAMPS partnership benefited significantly from the charrette process. Specifically, the charrette process engendered greater transparency, accountability, and trust among CHAMPS partners by encouraging collective negotiation of project goals and implementation, roles and responsibilities, and compensation and communication structures. The process also allowed for the exploration of newly identified challenges and potential solutions with support from CEs and AEs. Furthermore, the charrette also functioned as a catalyst for capacity building among CHAMPS community, academic, and medical partners. Future studies should compare the impact of the CBPR charrette, relative to other approaches, on partnership development and process evaluation outcomes.